Kidney Living - Spring 2012 by The Kidney Foundation

KIDNEY

living www.kidney.ca/ontario

Spring 2012 Volume 5 • Number 1

A PUBLICATION OF THE ONTARIO BRANCH

What’s in this issue – Spring 2012 3 4 5 6 7 8 9 10 11 12 13

Living the Good Life Walking the Talk Starting the Conversation Types of Living Donation The Volunteer Phenomenon Blue Builders

Blue Builders

Moving Forward and Giving Back Klunkers for Kidney Kidney Pages The Hidden Costs of Dialysis Signing Up is the First Step to Making a Difference

14 16 17 18 20 22 23 24 26

Kidney Diet Just Got Easier Rhythm Blue Follow the Doctor’s Orders

A Strong Connection Legacy Giving Society Kidney Lab Values Community Highlights Mark This Date

kidney transplant recipient, climbed Mt. Kilimanjaro, the tallest mountain in Africa (altitude of 20,000 ft) in six days. During his hike he raised awareness for The Kidney Foundation and the abilities of post transplant patients!

Editing, design and printing by GEPM Group Inc. www.gepmgroup.com

Follow the Doctor’s Orders

Are You a Numbers Junkie?

Cover photo: Mike Olivo-Moore, a

©2012. Kidney Living, the contents of which is subject to copyright, is published two times a year. Reproduction in whole or in part, in written, electronic or any other format, without prior written permission, is strictly prohibited. For more information, please contact Trish Reynolds, Editor at treynolds@kidney.on.ca or 1-800-387-4474 Ext. 4981. Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses to: Trish Reynolds, Communications Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:communications@kidney.on.ca. Phone:1-800-387-4474.

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The Kidney Foundation of Canada, Ontario Branch 2011-2012 Board of Directors Executive Harvey Thomson, President Terry Young, Vice President Peter Davis, Past President Debbie Lanktree, Treasurer Directors at Large Dr. Ann Bugeja Craig Kerr June Martin Janet Morgan Ken Mylrea Doug Parsons Brian Porter Greg Robbins Marlene Smith Mary Smith Micol Zarb Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003

Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca COMMUNITY CONTACTS Central Ontario 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca Chinese Renal Association 1-800-387-4474 Ext. 4977 atirone@kidney.on.ca Eastern Ontario 401 - 1376 Bank St., Ottawa K1H 7Y3 613-724-9953/1-800-724-9953 eob@kidney.ca Hamilton & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 ncharette@kidney.on.ca Kingston 100 Stuart St. Kingston, ON K7L 2V6 613-542-2121 alabrash@kidney.on.ca Niagara & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 ncharette@kidney.on.ca North Bay 705-476-3715 northbaykidney@gmail.com Northern Superior 605 Hewitson St. Thunder Bay, ON P7B 5V5 807-624-2680 kidney@tbaytel.net Sarnia-Lambton 546 Christina St. N., Main Floor Sarnia, ON N7T 5W6 519-344-3462 ehayter@kidney.on.ca Sault Ste. Marie 514 Queen St. E., 2nd Floor, Suite 1 Sault Ste. Marie, ON P6A 2A1 705-949-0400 ssmkidney@shaw.ca Southwestern Ontario 379 Dundas St., Suite 119 London, ON N6B 1V5 519-850-5362 kidney@execulink.com Timmins-Porcupine 11357 Hwy. 101 E. Connaught, ON P0N 1A0 705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District 1368 Ouellette Ave., Suite 310 Windsor, ON N8X 1J9 519-977-9211 kidney@mnsi.net Western Ontario (Kitchener/Waterloo) 379 Dundas St., Suite 119 London, ON N6B 1V5 1-800-667-3597 ccoghlan@kidney.on.ca www.kidney.ca/ontario

PERSONAL STORY

Living the Good Life “So here I am, fully entrenched in my life as a dialysis patient, but working hard not to let it define me.” by Trish Reynolds

“Chronic disease never goes away, so the goal for me is not cure, it is adaptation and symptom management.”

t ti bu sn’t er! e do e h fin de � �� I h �� i� ea�� i�

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ife, mother, daughter, friend, employee, co-worker and volunteer—these are the adjectives Elizabeth Aquino uses to define herself. Dialysis patient is last on the list and she works hard to ensure that it is just one small part of making her a well-rounded person. Elizabeth is just one of the many dialysis patients in Ontario who are not eligible for a kidney transplant and will rely on dialysis for the rest of their lives. A routine blood test when Elizabeth was 38 years old showed reduced kidney function, which was most likely caused by an undiagnosed infection. Three months later, through a kidney biopsy, she was diagnosed with multiple myeloma, and it was that disease that caused her kidneys to fail. “I couldn’t believe what I was hearing, and I didn’t believe that this was happening to me. I was angry, I remember thinking, I’m only 38. How could this be? I have four children to take care of and they still need me,” said Elizabeth. However, Elizabeth quickly realized that after every storm there is a rainbow. “Soon I felt like I was on top of the world. This illness was not going to take control of my life; I was going to be in control of it! I was balancing my career, taking care of my family, all while managing my chronic illness.” Elizabeth credits her change from in-centre hemodialysis to home nocturnal dialysis as having the biggest impact on her quality of life. In 2007, when York Central Hospital began its home hemodialysis program, Elizabeth was the first person to be trained. “With nocturnal dialysis I receive eight hours of dialysis through the night. In the morning, I wake up and get started with my day, much the same as anyone else.” Dialysis fits into Elizabeth’s schedule, which opens up so many opportunities to live her life the way she wishes—to have a career in public service, speak publicly about her experience on dialysis and travel with her family. “Chronic disease never goes away, so the goal for me is not cure, it is adaptation and symptom management. I try to encourage people on dialysis that their job is to self-manage—to follow their treatment plans, maintain their own safety and manage symptoms.” Right now Elizabeth’s multiple myeloma is dormant, but there is concern that if she had a transplant it could become active and she is simply not ready to take that risk. “With the support of my family, my nephrologist Dr. Szaky, the home hemodialysis medical team, and the realization that I currently have a good quality of life, my decision is to live on dialysis.” Each fall, Elizabeth and a team of family and friends take part in The Kidney Foundation’s Give the Gift of Life Walk. “I walk for all kidney patients, to raise awareness about the improvements to dialysis and to honour those we have lost to the disease. It’s an opportunity for my family to help raise awareness about early detection and to support The Kidney Foundation and the work they do,” said Elizabeth. “Fate put me here for a reason. I played the hand I was dealt and I’m able to rise above and live a full and meaningful life. I look at it as an opportunity to use my experience to educate and help others. It’s so important for me to show them how good I look, how healthy I am, so they can see what their lives can be living on dialysis.”  Spring 2012 / Kidney Living /

AWARENESS

Walking the Talk Healthcare professionals at St. Michaels walk in the shoes of their patients.

he arrival of the New Year, for many, represents a time for resolutions – new exercise routines, new diets, and new ways of thinking. For a group of healthcare professionals at St. Michael’s Hospital in Toronto it meant extending themselves and challenging themselves to “Walk the Talk.” The group, consisting of nephrologists, nurse practitioners, pharmacists, dietitians and students agreed to take the “Walk the Talk” challenge for one week. Some followed a renal diet while others took phosphate binding medications with all of their meals. The group wrote about their experience on a blog, http://walkthetalkchallenge.blogspot.com. Alison Thomas, one of the healthcare professionals involved in the challenge, got the ball rolling after reading a blog post which outlined how healthcare professionals took their own medical advice to gain a better perspective of what their patients were going through. Healthcare professionals know the benefits of being compliant with the renal diet. “We are constantly reminding and educating our patients in hopes that they follow our instructions. Although we all seem to understand that these restrictions are not easy for our patients, it’s safe to say that we don’t really know what they’re going through,” said Alison. “The goal for the challenge was simple: gain perspective and empathy to better understand what our patients are facing.” Day 1 was especially challenging. One participant posted: This was a tough day - I mean, I have tried changing my diet before, but this goes against so many things that I have always believed to be healthy. That has been a huge mind shift for me. For ex-

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ample, my usual snack mid morning is a handful (1 serving) of almonds. On a renal diet, my snack options (as provided to me today by my dietitian colleague in an ever-so-convenient handout...illustrations and all) might include bread sticks, unsalted pretzels (but the salt is the best part), - sugar cookies (yikes—so much for satiety), pound cake (ditto), dry cereals—e.g. fruit loops, lucky charms, or cornflakes or some low potassium fruit such as apples, berries and grapes or low potassium veggies (bell peppers, carrot sticks—but only eight!) Lesson for today—this renal-friendly diet takes discipline and planning. And it’s only Day 1! While the challenge for this healthcare team lasted only one week, they understand that there is no start and end date for the challenges their patients experience every day. The closing remarks on the blog capture a remarkable sense of compassion and pride in the dialysis patients who face these challenges every day, often with a smile on their face. This whole experience has made me even more empathetic towards patients who have family to take care of and at the same time finding the time to take care of their [own] needs. It definitely is not an easy task, let alone a lifelong task. This week has been an eye-opener. My colleagues and I realized just how difficult it is to change lifelong habits, and we only changed one small aspect of our lives. Our patients on dialysis have so many more changes they have to face—being on a machine four times a week, taking an abundance of medications at different times of the day, limiting their favourite

foods, not traveling as they please, not being able to work... the list could go on and on. I’m really proud of all of our colleagues that completed this challenge with us and blogged regularly on their experiences. I’m even more proud of my dialysis patients, who do this each and every day and still manage to keep it together and keep a smile on their face. When I drink my wine and eat my chocolate tonight, I will be toasting to their discipline as individuals. More importantly, I really feel I’ll remember this experience, and be a more empathetic health professional when I counsel my patients from this day forward. 

Ann Jones, Nurse Practitioner; Carol Huang, Dietitian; Alison Thomas, Nurse Practitioner; Arti Sharma-Parpia, Dietitian; Rosina Babai-Rad, Pharmacist.

www.kidney.ca/ontario

ORGAN DONATION

Starting the Conversation How do you ask someone to donate a kidney?

by Brigitte Talevski, MSW, RSW Social Worker, Living Kidney Donor Program Multiorgan Transplant Program Toronto General Hospital

idney transplant has evolved dramatically over the past 60 years. It has long been possible for a living person to donate a kidney to a recipient, whether they are related by blood or not. The living donor option has snowballed from direct donation (e.g. a daughter donates to her father or a friend donates to another friend), into a number of specialized programs over the last decade. This includes kidney paired exchange, kidney list exchange and non-directed donations. Regardless of which program is implemented, all necessitate the need for a living donor in order for a recipient’s transplant to happen. But how does one go about seeking out potential donors? Needless to say, it’s not a comfortable endeavour. Essentially this involves asking someone to go through surgery that they don’t personally need but rather, is primarily for the benefit of someone else. Recipients, for the most part, feel awkward and wary about approaching family and friends about being a living organ donor for them. There are a number of tips, however, that can make it easier to seek out potential living kidney donors:

Family and friends Hi Everyone: Just a note to update you all on what’s been happening with my health. I saw Dr. Emdee today and she told me I would likely be starting dialysis within the next month. She also explained that I am eligible for a transplant from either a living donor or a deceased donor. In spite of the daunting process of dialysis, it’s comforting to have the possibility of transplant ahead. In any event, I am prepared for whatever is down the road for me. www.kidney.ca/ontario

Thanks for all your caring and I know I can count on all of you for support as I follow my path. The content here is general and doesn’t put the pressure on anyone specifically to step up to the plate. Those who are curious for more details will definitely contact you for more information.

Your workplace If you have a supportive supervisor or colleague, with your permission, have them write an email on your behalf to your co-workers, citing your situation. It should be formatted as an FYI as opposed to any direct solicitation for a donor. For example: Hi All: As you are aware, Mary Smith has been off for some time now. She has given me permission to let you all know how she is doing. Many of you may not know that Mary has polycystic kidney disease, an illness that eventually results in kidney failure. This has recently happened to Mary and she has started dialysis. As this disease runs in families, many of Mary’s relatives find themselves in a similar situation. Nonetheless, she is hopeful about eventually finding a living kidney donor for a transplant. At present, she is on the lengthy waiting list for a kidney from a deceased donor. I am sure we all wish Mary our best for better health in her future. It is surprising how many times donors come forward to donate to a work colleague, sometimes even when there is no particularly close emotional relationship. Donors come forward for many reasons: perhaps a loved one died waiting for a transplant; maybe they identify with

you in some way that motivates them to consider donation. Sometimes, people simply come forward because they want to help, are appreciative of their own good health, or feel they want to do something meaningful for someone else.

Your place of worship Your place of worship is also a great opportunity to spread the word about your need for a kidney. All religions sanction transplants and view it as a life-saving procedure. Speak with your faith advisor to see if it is possible for him or her to prepare a sermon that addresses faith and transplant and how one of their members is in need of this life-changing gift. Unquestionably, all faiths share the common belief of helping others in need or in illness.

Social media Social media sites offer a great opportunity to get the word out that you are looking for a kidney. Sites such as YouTube and Facebook have literally exploded over the last number of years, connecting the world in their unique ways. Post blogs explaining your medical condition to keep your friends up to date on how your illness affects your quality of life and how you hope things will change for you after a transplant. With the evolution of innovative kidney transplant programs and creative ways for recipients to source potential donors, the possibility of getting a functional kidney in a timely manner is no longer hopeless. Here’s to your good health and to the health of living kidney donors and kidney recipients everywhere! 

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ORGAN DONATION

Types of Living Donation

irect Donation: A living donor gives their kidney to an individual they personally know, whether they are related by blood or not. For example, a son may donate to his mother, a man may donate to his work colleague, or a woman may donate to her best friend’s daughter. There is compatible blood pairing in these cases. However, if you are not a corresponding blood match and you’re still committed to giving your kidney to a particular recipient, we have now leaped over this hurdle. If medically suitable, a recipient can go through a process of “desensitization,” an intravenous treatment of several months’ duration that will enable them to accept a kidney from a non-matching blood group. Paired Exchange: Two sets of donor/recipient combinations are not blood matches but each donor is a match for the other pairing’s recipient. For example, Bob is an A blood group and wants to give his kidney to his wife Carol, who is a B blood group. The transplant program notes that donor Ted, who is a B blood group, wants to give to his wife Alice, who is an A. Each of these donors does not match their original intended recipient but matches the other’s recipient. It is now a growing practice to set up multiple pairings for a “domino” or “cascade” paired exchange where a number of recipients receive kidneys.

Kidney List Exchange: A donor is not a blood match for their intended recipient and there is no suitable pairing for a kidney paired exchange. The donor then gives a kidney to the recipient at the top of the list for their matching blood group. For example, Bob is an A blood group but can’t give to Carol who’s an O. Bob then gives his A kidney to Ted, also an A, who is at the top of the deceased donor waiting list. Because of Bob’s donation, an A person gets removed from the list and everyone else moves up on the list. In return, Carol gets to move to the top of the O list because she has already supplied a kidney to the system. Carol will get the next available deceased donor O kidney, barring any medical emergency where survival is threatened. Non-Directed Donors (NDD): This group is also known as “Anonymous Kidney Donors.” These are individuals who, primarily because of altruism, come forward to donate a kidney to a transplant program that is to be used in whatever way will best benefit their recipient group. If this kind of donor is an O for example, he/she is most valuable in a domino paired exchange: the NDD donates to the first recipient in the cascade and the living donor at the end of the line donates to the person on the top of the deceased donor list of their blood group. 

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VOLUNTEERS

The Volunteer Phenomenon What motivates them? by Mary Baxter

alerie Dennison has volunteered with the Thunder Bay Regional Health Sciences Centre Renal Service’s main hemodialysis unit for 11 years. She does little things to make patients comfortable, such as fetch them tea or a blanket. But what Dennison, 71, mostly does is to listen. Those who come to the unit “need people to talk to,” she says. “They pour their hearts out sometimes.” For organizations such as The Kidney Foundation of Canada as well as the renal services programs and research they support, volunteers like Dennison are crucial. From helping with fundraisers and special events to sharing experiences and support, their efforts make it possible to help those in need and work towards solutions. In fact, according to the Canada Survey of Giving Volunteering and Participating, nearly half of all Canadians 15 years old and over volunteered in 2007. Together, they donated 2.1 billion hours to sports and recreation, social services, education and research, and religious organizations. But what motivates volunteers to contribute their time? A 2004 Canadian Centre for Philanthropy study by David Lasby concludes that believing in the cause is the primary motivation for 95 percent of Canadian volunteers, followed by an opportunity to use skills and experience (81 percent), being personally affected, or knowing someone who was personally affected by the cause an organization supports (69 percent) or to explore their own strengths (57 percent). For top volunteers like Dennison, who typically dedicate more than an hour each day to volunteer activities, the answer can be complicated. By the time she arrived at the hemodialysis unit, Dennison was an accomplished volunteer, having, among other things, developed a program to help single parents change their lives, taught literacy skills and acted as a community food advisor. But increasingly she was aware of people’s need for spiritual care and wanted to help one-on-one. Many in the unit deal with other health issues along with kidney failure. Her goal was to help soothe their April 15-21, 2012 spirits, even if only briefly. She talks about receiving more than she gives. Volunteering provides an opportunity to experience extraordinary and inspiring acts of courage and hope. Take, for example, the 80-year-old man who undertook hemodialysis so he could watch his grandchildren graduate from university—and he did. Or the woman who waits patiently for her kidney transplant, never complaining, making the most of each day and accepting her circumstances. “When you see so much of that, you really realize how precious life is and how we should appreciate everything in life, every single second, every gift that we’re www.NationalVolunteerWeek.ca given,” Dennison says. 

National Volunteer Week

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BUILDING A FOUNDATION

Blue Builders Forget green. We have a blueprint for success. by Trish Reynolds

ax Kazman’s email signature says “semi-retired person,” but he is far from semi-retired. As a Kidney Foundation volunteer, Max works year round on a number of Kazman kidney events to help raise funds for a cause he is very passionate about. “I became involved with The Kidney Foundation when I was able to donate a priceless gift, my kidney, to my late brother Marty. I am a board member and volunteer trying to make life better for all people affected by this disease.” This March, the Kazman family will celebrate the 10th anniversary of the Kazman Kidney Dinner and Dance in Brampton. Couple that with the annual Kazman Kidney Classic golf tournament—an event that is still going strong after eight years— and you quickly realize the kind of impact community-based events organized by volunteers can have. “Communities—that’s where people can make an impact. Personal contact is the best way to spread the message about kidney health and organ donation. The real benefit is that it costs nothing but a few hours of my time,” said Max, “What a gift!” Community-based fundraising—sometimes called third-party fundraising—are events organized by volunteers with little involvement from the Foundation. Driven almost exclusively by volunteers, community events provide boundless opportunities to raise awareness and funds. From golf tournaments to holiday parties, bowling events and BBQs, the opportunities to organize a fundraising event are limitless. Last year over $280,000 was raised by volunteers and supporters to support the vision and mission of The

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Kidney Foundation. “The personal interaction with other Kidney Foundation volunteers and staff, the interactions with patients and families—those conversations where someone simply says thank you—it’s truly a great feeling and personally satisfying to know you are making a difference,” said Max. 2012 is the year of “Blue”—Kidney Foundation blue that is, and we’re looking for your help to organize events in your community to support The Kidney Foundation. Information and tips on how to plan an event are included in our new Blue Builder web pages found at www. kidney.ca/bluebuilder. When you become a blue builder you are taking steps to help build our Foundation and expand our capacity to fund innovative research that continues to provide better treatment options, earlier detection and programs and services for individuals already living with kidney disease. With 10 years of event coordination under his tool belt, we asked Max about his own blueprint for success: “Make sure that you make contact with your local Kidney Foundation office, as they can assist you in every step of the development process. They can help by posting your event on their website, and may be able to assist with creating online ticket pages or registration pages for your event.” Max was quick to add an important tip number two: “Have a strong support system: my wife Heidie, and our kids Peter and Ryah always get involved and assist. It’s a family affair. They know that there are two very important events for us and the dates are always on their calendars well in advance,” added Max. 

“I became involved with The Kidney Foundation when I was able to donate a priceless gift, my kidney, to my late brother Marty.”

www.kidney.ca/ontario

PERSONAL STORY

Moving Forward and Giving Back Mary Diemer will always remember that day more than 10 years ago when she had a kidney transplant. by Heidi Westfield

“I am still here.”

www.kidney.ca/ontario

t was September 5, 2001. After so many years of feeling sick, of being so tired, it changed the course of her life. The transplant gave Mary a new energy, and excitement about the future. She also came to realize, in a very personal way, why funding research into kidney disease is so important. “I was diagnosed with Rapidly Progressing Glomerulonephritis when I was 19,” she remembers. She was in Grade 13, and had had recurring bouts of illness all year. By the time doctors discovered what the problem was, Mary was left with only 20–25 percent kidney function. She was told that her kidneys would last not more than 12 more years, but they kept going for over 15. In the year 2000, Mary started to feel the full effects of kidney failure, and her doctors started looking into a transplant. “I had to make the phone calls to my brothers and sister to ask if they would be willing to be tested to see if they were a match. All of them said, “Of course,” and my sister Marg was a match, and very willing to donate.” The surgery was a success, and now Mary sees her life in two parts; before she got a new kidney, and after. “It’s funny, even with a suppressed immunity I feel the healthiest I have ever felt. Before my transplant it felt like we were always waiting for the next illness to take me down. I don’t feel that way anymore.” Not long after the surgery, Mary began her career working in a public library, and is now a full-time school librarian. She also started volunteering with The Kidney Foundation. A friend whose husband had a transplant, invited her to the first annual Kidney Walk in Windsor, Ontario in 2002. “I think that first year there were maybe three or four of us who walked. And every year we would get invited again and our team started to grow.” At one point, she says, “Mary’s Spare Parts” made up over half of the walkers. They had about 50 people on their team, from 84-year-olds, to babies in strollers. The Walk has grown to become part of her and her husband’s life, and includes their extended family. Through the Walk, and other volunteer activities, she and her husband have become increasingly committed to The Kidney Foundation, and its ideals: “I feel like I am a transplant success story. People are absolutely shocked when they find out I had a transplant. Raising awareness is very important to us. When people see how healthy and active I am, it’s a testament to how successful transplants can be.” Mary believes that research is the key to helping people like herself face down kidney disease, and not just keep going, but be healthy enough to lead active lives, and give back to their communities. When people ask Mary how donating to The Kidney Foundation can help their communities, she uses herself as an example: “I am still here.” “When you raise money for research,” she says, “it helps doctors and scientists improve the lives of kidney patients, who in turn can work to build stronger support systems for others with the disease in their region. It’s an incredible testament to just exactly what your donation goes to support.”  Spring 2012 / Kidney Living /

FUNDRAISING

Kidney Cars A painless way to make a real difference.

very day, people in Ontario wave goodbye as their beloved cars are towed away by Kidney Car. Our tow truck drivers hear great stories about first cars, family road trips, and inspiring stories from those living with kidney disease. We ask all of our donors, “How did you hear about us?” and time and time again, the top reply is “Word of mouth.” So start spreading the news that Kidney Car is the quick, convenient way to get rid of unwanted vehicles. Share your kidney car story with friends, family and colleagues. Share it with us, we would love to hear your kidney car story—email communications@kidney.on.ca.

Can you help give Kidney Car a “boost?” Try these simple ideas for promoting Kidney Car in your community: • Next time you bring your vehicle in for maintenance, please tell your mechanic about Kidney Car. • When purchasing a new vehicle, tell your dealer that you will be donating your old vehicle to Kidney Car rather than trading in. • This tax season, ask your friend with the “fixer upper” if there is a tax receipt in his driveway (minimum $300). • Love cars? Contact your local Kidney Foundation Chapter to learn about local volunteer opportunities for promoting Kidney Car in your area. Whether it’s the fast and free towing backed by friendly customer service, or the knowledge that your old vehicle is changing lives, Kidney Car is the perfect answer for your unwanted vehicle. Visit www.kidneycar.ca to learn more about Kidney Car. 

Your Story is Worth Sharing How has kidney disease impacted your life? Share your inspiring story and we may feature it on our website or in Kidney Living.

Email us your story in 300 words or less and include a high resolution photo!

communications@kidney.on.ca Raising awareness in Ottawa area neighbourhoods Kidney Car partners, Cohen and Cohen, recently painted one of their tow trucks with Kidney Car branding. This truck is on the roads of Ottawa more than 60hrs every week, and is already leading to increased awareness. You may be seeing more Kidney Car tow trucks in your community as additional partners paint trucks in their fleet.

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We are eager to read about you!

www.kidney.ca/ontario

FUNDRAISING

Kidney Pages New tools launched to help supporters raise funds online.

he Foundation has launched exciting new online fundraising tools that make it easier than ever to help people living with kidney disease. The tools enable supporters to build web pages to celebrate milestones such as the anniversary of a kidney transplant, wedding day, birthdays and fundraising events.

Celebration Pages There are few moments in life as special as receiving the gift of life. What better way to celebrate the anniversary of your transplant than by creating your own personal transplant anniversary page and raising funds to help promote organ donation awareness. Celebrating a birthday or wedding, your friends and family can support your charity of choice easily. You can also upload your own photos and messages, or set a goal amount and get a virtual thermometer to track your fundraising.

Fundraising Event Pages – Coming Soon! One of the best ways to show your support for the Foundation is by hosting your own fundraising event. Whether it’s a barbecue or pool party in your back garden, bake sale or personal challenge, you can use our new tool to create an event page and ask for donations. Personal pages can also be used when you are participating in marathons or other pledge-based events. To build your own page today and learn more about these exciting new tools, visit www.kidney.ca/kidneypages. If you have a question or need support, please contact webmaster@kidney.ca. 

NEW! Create Your Kidney Fundraising Webpage Today!

kidneypages

make a page | make a difference

Visit www.kidney.ca/kidneypages to get started www.kidney.ca/ontario

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LIVING WELL

The Hidden Costs of Dialysis Being on dialysis or having a kidney transplant can place an undue financial burden on patients and their families. by Trish Reynolds

t’s no surprise that coping with a chronic illness places a great deal of stress on patients and their families. Adjusting to new regimes of medications, diets, doctors appointments, and learning the medical jargon is more than a little intimidating. Throughout 2012, Reducing the Burden – Addressing the Hidden Costs of Kidney Disease will remain one of the key messages of our Government Relations and advocacy work. According to Kidney Foundation studies, up to 30 percent of dialysis patients are living in poverty. Treatment-related out-of-pocket costs can certainly add up. For Oliver Nault, the costs associated with traveling from his home in Rainy River, Ontario to Fort Frances, Ontario for regular dialysis treatments seem to be escalating with each passing year. In order to live, he must receive 3.5 hours of dialysis three times a week. To add to his already inflated travel expenses, Oliver is visually impaired and must have someone drive him to and from his appointments and attend to any special needs encountered during the trip. He is also diabetic and needs to purchase special meals en route. “Since I am legally blind I cannot drive. I have to pay someone to drive me to Fort Frances and to also attend to my needs to account for my visual impairment,” says Nault. “And as a diabetic my meals must be on a regular basis.” For some northern Ontario residents, the Northern Health Travel Grant provides limited assistance. But for Oliver, he is a mere four kilometres short of meeting the criteria set out by the government. “My trips to and from Fort Frances fall approximately four kilometres short each way and I am not entitled to a travel grant allowance as established in the government guidelines,” says Nault. “It would surely help me to alleviate some of the

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expenses I incur for the purpose of attending life-saving dialysis.” W hile some may think that home dialysis is the answer to reducing the financial impact of traveling three times a week to dialysis, they would be mistaken. Increased water, hydro, and garbage disposal fees for home dialysis can also place a significant burden on the household budget. Rick Sgroi of Richmond Hill has been on dialysis for five years. Rick decided to transition to home hemodialysis, which is a great treatment option for kidney patients with busy lives. However, home dialysis has resulted in unexpected and sometimes surprising out-of-pocket costs. “When I started training for home hemo I didn’t realize how much water was needed,” recalls Sgroi. “The problem is I’m on septic and well water and home dialysis requires about 300 gallons of water per session. My old system could not handle that amount of water.” In order to get his house in Richmond Hill ready for regular home dialysis treatments that he needs in order to live, he had to essentially do a complete overhaul of his water system. “The engineering plans, cost of new well, cost of the oversized septic system and all inspections cost me $60,000,” says Sgroi. “My hydro bill is up 45 percent, plus

I had to install another water softener.” James Quinn from Mississauga has experienced the issue from all angles. He has been on dialysis at St. Michael’s in Toronto and dealt with the financial impact of traveling to and from dialysis and the very high cost of parking in Toronto; he has had a transplant that lasted 23 glorious years and is now on home hemodialysis. ”One might think that a transplant solves all of these financial issues. Again, not so. Although thrilled with my new kidney, I was not prepared for the costs of meds associated with maintaining my new kidney.” The costs for James’ medications fluctuated between $800 to approximately $1,250 per month, or $15,000 per year. “I am thankful that we had health insurance through my wife’s company. Though you have to realize that even with insurance coverage many policies only cover 60 – 80 percent of the total costs. Meaning at times we had to cover $3,000 out of pocket. It is hard enough to deal with the emotional and psychological factors of a chronic health issue. The Kidney Foundation of Canada, Ontario Branch believes that the Ontario Government needs to establish a mechanism to provide assistance to patients and families who are incurring high treatment-related costs relative to their incomes. 

Did you know? • • • •

According to the Canadian Organ Replacement Register Report, the average age of new dialysis patients in 2009 was 65. Patients aged 65 years and older are not eligible for provincial assistance programs such as the Ontario Disability Support Program (ODSP) which provides funding for transportation to medical treatment. The Northern Health Travel Grant provides limited assistance only for Ontarians living in the north. Some patients have insufficient income to take advantage of Federal Medical Expense Tax Credits and other tax reduction measures. www.kidney.ca/ontario

FUNDRAISING

Signing Up is the First Step to Making a Difference Give the Gift of Life Walks are coming to a community near you.

his fall we invite you to join us in a community near you for our Give the Gift of Life Walks. The walks are a special time for dialysis patients, organ transplant recipients, donor families, living donors and the medical and business communities to not only to celebrate advances in kidney health and organ donation but to support the Foundation in such a way that we can do more. With your help we can do more to create a better future for the more than 10,000 Ontario families living with kidney failure; to find ways to facilitate earlier detection, to invest even more in innovative research that helps treat kidney failure better, we can ensure that education and support is available to those who need it. Will you sign up to help make a difference? Fighting kidney disease is a team effort. Get started, follow these easy steps to sign up as a Walk Team Captain: 1. Visit our new and improved kidney walk website www.kidneywalk.ca (launched April 15) 2. Select the community where you want to participate from our list of locations 3. Click the register as a Team Captain option 4. Personalize your fundraising page 5. Email friends and family and inspire them to join your team or contribute to your fundraising effort. 6. Have fun! You’ve taken an important first step to raise awareness about kidney health and organ donation. Interested in sharing your story? Email communications@kidney.on.ca and tell us about your kidney journey.

We’ve signed up! Will you?

www.kidneywalk.ca Our new website will feature all of the latest information, so be sure to check back often for new locations, new incentives and all of the latest tips and tools to help you’re your walk experience a memorable one. 

2012 Walks Coming to a Community Near You Aylmer, Belleville, Brantford, Brampton, Brockville, Caledonia, Chatham, Cornwall, Durham Region, Elliot Lake, Guelph, Goderich, Halton Region, Hamilton, Hanover, Hawksbury, Iroquois Falls, Kingston, Kitchener, Leamington, London, Manitowaning, Mississauga, North Bay, Orillia, Ottawa, Owen Sound Pembroke, Penetanguishene, Perth, Peterborough, Pettawawa, St. Catharines, Sarnia, Sault Ste. Marie, Scarborough, South Porcupine, Strathroy, Sudbury, Tillsonburg, Thunder Bay, Toronto, Windsor & Essex County, York Region

www.kidney.ca/ontario

kidneywalk.ca

Spring 2012 / Kidney Living /

EAT TO LIVE

Kidney Diet Just Got Easier Free online tool lends a hand in the kitchen.

by Trish Reynolds

Mr. Andrews left an incredible legacy to help those living with kidney disease through his bequest. .

/ Kidney Living / Spring 2012

or people living with kidney disease, managing their diet feels like a full-time job. But help has arrived with www.kidneycommunitykitchen.ca. The Kidney Foundation of Canada launched a new online space called the Kidney Community Kitchen, designed specifically to reduce the burden of coping with kidney disease diets. “The Kidney Community Kitchen is simply the best online tool I’ve used for managing the kidney diet,” said Patricia Treusch, who donated one of her kidneys to her 17-year-old son in 2007. “It meets the needs of those dealing with kidney disease and dialysis on so many levels. The first thing that comes to mind for me is the improved quality of life. It will help bring back the joy of healthy eating and sharing a meal.” Free and easy to use, www.kidneycommunitykitchen.ca provides a way to plan meals and track intake of critical nutrients. Some of its features include: • Dietitian-approved and kidney-friendly recipes • Drag-and-drop meal planner that tracks vital nutrients • Drag-and-drop, ready-to-go weekly meal plans created by dietitians • The ability to submit your recipes to be added and reviewed by dietitians • A way to ask nutritional questions of qualified dietitians • Forums for sharing stories, ideas and favourite recipes • Diabetic exchange amounts—good for people monitoring diabetic and renal diets • Tips, frequently-asked questions and other nutritional info about the kidney diet More than 60 volunteers contributed hundreds of hours to the project through design consultations, recipe review, recipe testing and user testing. “Bilingual and adfree, www.kidneycommunitykitchen.ca is a community effort that will make people’s lives easier and give them a better way to manage their diet,” said Paul Shay, National Executive Director of The Kidney Foundation of Canada. The Kidney Community Kitchen was made possible by a generous bequest from the estate of James MacOwen Andrews. Mr. Andrews had a keen interest in diet, nutrition and prevention of kidney disease and renal failure. He spent considerable effort researching and managing his diet as a result of his own kidney problems. He was frustrated that good information was hard to find. Thanks to his personal insight regarding the challenges of living with a kidney diet—and his generosity—www. kidneycommunitykitchen.ca is now available to help reduce the burden for others. Anyone who is inspired by Mr. Andrews’s bequest and this new online resource to help reduce the burden of kidney disease can visit www.kidneycampaign.ca or www.kidney.ca/page.aspx?pid=658#bequest to find out how they, too, can make a difference.  www.kidney.ca/ontario

EAT TO LIVE

Pot Roast This recipe is a great make ahead recipe and freezes well into individual portions for times when you need a quick dinner. Makes excellent leftovers. Ingredients 2 pound boneless beef chuck or rump roast 2 tablespoons vegetable oil ½ cup onion, chopped 3 garlic cloves, minced 1 cup rutabagas (turnip) 1 teaspoon dried thyme 1 teaspoon dried oregano 2 cups water 3 tablespoons cornstarch 3 tablespoons water, very cold ½ cup carrots, sliced Directions 1. Brown meat on all sides in the oil. 2. Add onions, cover and cook on low heat for 15 minutes. 3. Add garlic, rutabagas, herb seasoning and 2 cups of water. 4. Cover tightly and simmer 3½ to 4 hours, until the meat is tender. 5. Thirty minutes before the pot roast is ready, mix the cornstarch and cold water in a small bowl. 6. Add ½ cup of hot liquid from the pot to the cornstarch mixture to form a slurry. 7. Then add the mixture back into the pot and stir. 8. Add the carrots and cook for an additional 30 minutes. Diet Type: High Protein / Low Sodium Renal Diet Nutrient Analysis: Servings per recipe, 10; Serving size, 3 ounces Nutrient Analysis: Calories, 310; Protein, 27g; Carbohydrates, 5g; Fibre, 1g; Total Fat, 20g; Sodium, 62mg; Phosphorus, 229mg; Potassium, 318mg;

Stay Connected Did you know you can now receive Kidney Living by email? You’ll receive the same great content as the print version and you’ll get it a few days earlier. Receiving this newsletter electronically also assures the Foundation can keep costs low by decreasing printing and postage expenses. To change your subscription to an email version, simply send your name, current mailing address, telephone number and email address to grose@kidney.on.ca. Please put “Change Kidney Living Subscription” in the subject line.

Renal and Diabetic Exchanges: 3 protein

www.kidney.ca/ontario

Spring 2012 / Kidney Living /

FUNDRAISING

A FUTURE WITHOUT

hythm & Blue, a hip gathering, takes centre-stage Thursday, May 31, 2012 at Airship 37 in Toronto’s Historic Distillery District. This special evening is a celebration of the many advances made in transplant research and includes a special tribute to honoree Don Cousens for his outstanding contributions to the community and his dedicated commitment to kidney research. In addition to being one of Canada’s most successful municipal leaders (he was Markham’s MPP from 1981 to 1993, and Mayor from 1994 to 2006 during a period of unprecedented growth), Don is also a two-time kidney transplant recipient and a long-time volunteer and supporter of The Kidney Foundation of Canada. Proceeds from this special evening will help us reach our goal of topping-up The Don and Aline Cousens’ Research Fund to half a million dollars, making it one of the largest named funds established at The Kidney Foundation to date, and a suitable testament to Don’s amazing legacy. Don is also an Honorary Cabinet Member of the Kidney Foundation’s New Challenge Campaign. The evening will feature the smooth sounds of the spectacular R&B group, Leroy Emmanuel and the LMT Connection, delicious food, and of course, dancing – if you dare! A ll proceeds from the event will be dedicated toward the Don & Aline Cousens’ Kidney Research Award, a fund which supports leading kidney researchers from across the country. Tickets are $200. For further information and to reserve your tickets, please contact Elisa Hope at 905-271-4949, 1-800387-4474 ext.4949 or visit www.kidney.ca/ ontarioevents for online ticket sales. 

/ Kidney Living / Spring 2012

FAILURE In the 1960s, people with kidney failure had limited access to treatment and little chance of survival. We have come a long way since then, yet today there are still a record 2.6 million Canadians suffering from, or at risk of kidney failure, and there still is no cure.

RE SE ARCH WIT H RE SULT S Year after year, our internationally-reputed, nationwide granting program supports the most promising research in Canada, wherever it is happening, as determined by a panel of Canada’s top kidney researchers. To date, we’ve invested more than $100 million in life-saving kidney research. But there is an urgent need to do more. That is why today we are boldly embarking on our first-ever nationwide campaign, The New Challenge Campaign, to raise more money than ever before for research, early detection, patient services and capacity building.

JOIN US IN T HE CHALLENGE

We’ve come a long way in 50 years. Imagine what an even greater investment could help us achieve.

www.kidney.ca/ontario

LIVING WELL

Follow the Doctor’s Orders A prescription for kidney health. by Erika Muscat

f you passed Rodney Richardson on the street, you’d think he looks like your average, healthy 67 year old man. Rodney was born and raised in Bermuda, is married, has three grown children and five grandchildren, with two more on the way. He is retired from three careers but has a couple of side jobs to keep himself busy and he enjoys life to the fullest. Rodney is also living with someone else’s kidney inside of him. At the age of 49, Rodney was diagnosed with diabetes. “I figured everything was going to be alright,” said Rodney about his disease. Millions of people have diabetes and live normal lives. He managed his diabetes well for the first eight years, but then things started to fall apart. He couldn’t afford certain medications so he stopped taking them. Doctors were monitoring his creatinine and it wasn’t long before it was out of control.. At the age of 64, Rodney was diagnosed with kidney failure. Despite subtle warning signs, this diagnosis seemed to creep up on him. “My wife saved my life,” he says fondly. Rose Anne Richardson recognized that something wasn’t right. Rodney was sleeping 10 hours a day, vomiting from time to time, and had more than the normal amount of nosebleeds. She took him to the doctor who then ordered a blood test. A few hours later, he received a phone call instructing him to go to the hospital immediately. Within hours, he had a shunt and was receiving dialysis in order to sustain his life. The next few months were very overwhelming. Rodney began dialysis, first hemodialysis and then peritoneal dialysis. PD gave Rodney much more freedom. In fact he was even able to travel back home to Bermuda with ease. When Rodney started researching about getting the supplies shipped for his PD to Bermuda, he www.kidney.ca/ontario

found out that they came from Puerto Rico and would cost him hundreds of dollars. He ended up bringing the 90lbs of fluid (five boxes) with him on the plane at no charge. Though he missed out on some of the sightseeing because he had to return to the hotel room to do his exchanges, Rodney felt good and it was a great trip. May 20, 2011 was a day that Rodney will never forget. At two o’clock in the morning, his pager started beeping. London Health Sciences Centre had a kidney for him and he needed to be there by 6:00am. Later that afternoon, he received his kidney transplant. Today, Rodney feels excellent and is improving every day. He walks a lot and is eating healthier than ever.

“The quick onset of my kidney disease was a result of not following the doctor’s orders,” says Rodney. He believes that a lot of people think they can eat what they want and they’ll be fine, but this leads to major problems. To show his gratitude and make the most out of his new, healthier life, Rodney wrote a letter of thanks to his donor family. He visits the dialysis unit every few weeks to provide words of encouragement to those on dialysis. He also walks each September in The Kidney Foundation of Canada’s Give the Gift of Life Walk, helping to promote kidney health and organ donation, while also raising money for much-needed research and patient programs and services.

Continued on page 18

Printed with permission Chalet Studio Photography

Spring 2012 / Kidney Living /

LIVING WELL Upon further research, Rodney found out that kidney disease runs in his family. His mother and several cousins had or have the disease. While there is definitely a genetic component to his renal failure, the onset could have been delayed by managing his diabetes better. “You really have to listen,” is the message that Rodney wants the public to know. “Exercise, eat right, and if you have warning signs, don’t ignore them. It could save your life.” 

Are You a Numbers Junkie?

he Ontario Renal Network continues to enhance its website and provide leadership to manage the delivery of kidney care in Ontario. It’s always been challenging to source up-to-date information about the number of patients living with kidney disease in Ontario. The recent addition of the CKD System Atlas on the Ontario Renal Network website attempts to change that by including comprehensive data about chronic kidney disease in Ontario. For example, did you know that: • There are approximately 9,800 patients on dialysis in Ontario. • 77.5 percent of Ontario’s dialysis patients received facility or hospital-based hemodialysis and 22.5 percent received dialysis in home (home hemodialysis and peritoneal dialysis) in 2010/11. Use the atlas to learn more about the demography of kidney patients. Find out about the characteristics of Ontario’s dialysis patients. Learn how far they travel for treatment. Learn how different types of dialysis are distributed across Ontario, and compare within Canada and around the world. Detailed information about the number of people living with chronic kidney disease, and dialysis modalities can be searched at the provincial, Local Health Integrated Network (LHIN) and program (hospital) levels. The Atlas can be sourced online at www.renalnetwork.on.ca. 

Donate by Text We now have a new, convenient way for you to help support The Kidney Foundation of Canada. With a simple text message, you can make a $10 donation to The Kidney Foundation. Simply text the word “KIDNEY” to 45678. Each $10 donation will be added to your next mobile phone bill.* You can donate up to $30 per month. 2 Simple Steps 1. Text “KIDNEY” to 45678 to donate $10. 2. Confirm your donation by replying YES. *A one-time donation of $10 will be added to your mobile phone bill or deducted from your prepaid balance. All charges are billed by and payable to your mobile service provider. Service is available on most carriers. Donations are collected for the benefit of The Kidney Foundation of Canada by the Mobile Giving Foundation and subject to the terms found at www. mobilegiving.ca. To unsubscribe, text STOP to 45678, for help text HELP to 45678.

/ Kidney Living / Spring 2012

www.kidney.ca/ontario

LIVING WELL

Recognizing 10 years of partnership with the nephrology community, to support renal programs and patients.

Amgen Canada Inc. 6775 Financial Drive Mississauga, ON L5N 0A4

www.kidney.ca/ontario

Spring 2012 / Kidney Living /

WORKING TOGETHER

A Strong Connection Kidney patients take the initiative in providing peer support.

by Mary Baxter

Patients facilitate all of the groups, with the support of local hospital renal programs and the Foundation.

Editor’s Note: Since this article was written, a new Brantford group is beginning to take shape, facilitated by Brenda Barham and Renal Social Worker, Beth McCool. Their inaugural meeting was held in January with plans for a second meeting March 20, 2012. Contact Anne Brinkman for more information.

/ Kidney Living / Spring 2012

s Carol Sallasvaara approached end stage kidney disease she yearned for support. The Kitchener woman already had assistance from the Grand River Regional Renal Program that was treating her, but she wanted a different perspective. She wanted to hear from people like herself; patients going through the experience. After her transplant, Carol became involved with the Kidney Connect Peer Support Program with fellow patient and long-time peer support volunteer Rosemary Lejeune. Together they worked with the Foundation and the Grand River Hospital Renal Program to determine whether or not there were others who thought a group would be of interest and benefit. Indeed there was interest from other patients as well as support from the Hospital and the Renal Community Council for the development of the group. The pair obtained peer and group facilitator support training through The Kidney Foundation’s Kidney Connect Peer Support Program, which also coordinates one-on-one telephone peer support. The support group was launched on May 19, 2009. Interest in the group support program is growing: of the four Kidney Connect peer support groups operating in Ontario, three have been introduced since 2009. Discussions to develop more are underway. Patients facilitate all of the groups, with the support of local hospital renal programs and the Foundation. Organizers say that for those struggling with the disease’s impact on their lives, meeting and talking with other patients offers a reassuring camaraderie. Sallasvaara recalls one woman who arrived at her group “so overwhelmed, so anxious and uptight.” Several meetings later she began to laugh and became more optimistic. “She just feels like she’s not alone in this journey with kidney disease,” Sallasvaara says. The Kitchener group meets monthly in the afternoons. Attendance fluctuates between 15 and 20. Like the other groups, it offers support to patients, caregivers, family and friends. Often meetings discuss treatment options. Travel is a hot topic lately, as is diet. The group tackles tougher questions too, such as how to maintain hope. One thing you won’t find, unless specifically invited as a resource, are medical staff. You won’t find them at the Lakeridge Health support group’s monthly meetings either, says Roger Wharmby. Wharmby is one of four who facilitate the long-running Oshawa www.kidney.ca/ontario

WORKING TOGETHER group that is the model for the more recent groups. “When staff are there, patients don’t talk,” he explains. “Hospital staff is incredibly supportive,” he says. They promote the meetings to patients and even volunteer at the group’s annual barbecues and Christmas parties that are held to break the ice and expose patients to a group environment. (The group also holds annual seminars on topics such as travel or disability and tax credits.) In turn, seeing the hospital staff’s extra effort means a lot to patients, he says. “It means people actually really do care.” Accessibility and promotion are key considerations and in Thunder Bay they present some unique challenges, says Pauline Cernigoj, one of two facilitators for that community’s group. Like the other groups, the Thunder Bay peer support group relies on hospital staff and materials from the Foundation to promote meetings. They also post flyers where short-term accommodation is available because many northern patients must travel to receive treatment. As well, the group relocated meetings to the hospital from a local community centre. It’s more accessible for patients and can accommodate video conferencing. Eventually they hope to include people using satellite dialysis units in Fort Frances and Sioux Lookout, Cernigoj explains. This year, the group will alternate between monthly afternoon and evening sessions to accommodate those who can’t make it during the day. “I just love the way it’s rolling out,” Cernigoj says. “I feel really hopeful.” The newest peer support group, established last year in Mississauga, uses a Credit Valley Hospital satellite unit that has easy access to Hwy. 401 and now meets every second month. “Every meeting it seems to be getting a little bit bigger,” says Terri Chanda, the hospital’s renal improvement lead. She helped launch the group last year by partnering with The Kidney Foundation to coordinate an introductory meeting to introduce patients to the idea. The hospital’s renal program is fully behind this vital service and helps promote it to other patients, she says. From the partnership with the Foundation, to the volunteer facilitators’ enthusiasm and the patients’ positive comments, every aspect of its development “has been a success in my eyes,” she says.

Interested in finding out about the Kidney Connect program? Contact Peer Support Manager Anne Brinkman at 1-877-202-8222 for more information. 

Tax Tipsfor Dialysis Patients The tax tip information package is available online at kidney.ca/taxtips or through your Renal Program. The package includes information about the Disability Tax Credit, eligible medical expenses, home dialysis expenses and more. While we make every effort to be accurate, we recommend you seek professional tax advice for your individual questions.

www.kidney.ca/ontario

Connect with someone who understands 1 866 390 PEER (7337)

If you or someone close to you has kidney disease, sometimes it helps to talk about it. The KIDNEY CONNECT Peer Support Program puts you in touch with other people who are affected by the disease. They’ll share their own experience with treatment, lifestyle, family and work issues. And they can answer many of your questions because they’ve been their too.

“We were completely blind-sided by the diagnosis and I had so many questions. You can read text books and manuals but there is a time when you need to talk to someone, someone who understands.” Kidney Connect Program Participant

www.kidney.ca

Spring 2012 / Kidney Living /

PERSONAL STORY

state gifts or bequests have always been an important and valued source of funding for The Kidney Foundation. In 2011, The Kidney Foundation of Canada established a new Legacy Giving Society to recognize and honour individuals who have included The Kidney Foundation in their estate plans. Making a planned gift to a charity you believe in is an extremely personal decision—and one that can have tremendous impact. We recently interviewed Dr. John Dossetor, one of the founding members of our Legacy Giving Society, to find out what motivated him to make a planned gift. “I’ve learned along the way that sometimes you have to take a leap of faith. That is never easy to do; just imagine how much harder it is when you have to take a whole family along with you. In 1958, when 15-year-old Moira Johnson was admitted to our medical care, her life was in jeopardy. Back then, her prognosis was very poor. Dialysis was an extraordinary treatment and kidney transplantation was very experimental. But there was hope. Moira had an identical twin sister, Nola, who was willing to donate a healthy kidney. To save one of them, we had to put both of their lives at risk. Our team at the Royal Victoria Hospital in Montreal had never done a kidney transplant before. We had no drugs to help the healing process, and no idea how long someone could survive with one kidney. All we knew was we had to try. That surgery became the first successful kidney transplant in the Commonwealth, granting Moira 29 more years of life. Nola is still alive today. These events paved the way to unbelievable new frontiers in the treatment of kidney disease. Though dialysis is in no way a cure, it is a vastly improved treatment, and there is no doubt that more advances will be made. Transplantation surgery is now successfully performed across the country, and continual improvements in anti-rejection drug therapies are allowing transplant patients to live much longer. We simply have to ensure that these advances continue. That is why I intend to include The Kidney Foundation of Canada in my Will. I believe that my leap of faith in 1958 paid off, and my bequest is a simple, yet immensely powerful way to extend my life’s work far beyond my own career.” John B. Dossetor, OC, BM BCh (Oxon:), FRCPC, Ph D. (McGill), Professor Emeritus (Medicine/Bioethics, U/Alberta)

If you would like to find out more about joining The Kidney Foundation’s Legacy Giving Society by making a gift in your will, please contact Susan McKenzie at smckenzie@kidney.on.ca or 1-800-387-4474 ext. 4960. 

Dr. John Dossetor

/ Kidney Living / Spring 2012

www.kidney.ca/ontario The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1

MEDICAL RESEARCH

Kidney Lab Values:

What do they mean?

by Dr. David N. Perkins, Nephrologist, Credit Valley Hospital, Mississauga

ne important way your doctor monitors your kidney health is with lab values. This article explains some key lab values.

Creatinine: A high creatinine value indicates your kidneys are not working properly to remove creatinine from the blood. Creatinine is made by muscles. More muscular people may normally have slightly higher creatinine values.

Estimated Glomerular Filtration Rate (eGFR): This value is usually mentioned with creatinine. It provides a “percent estimate” of kidney function, and also corrects for differences in muscle mass. A low eGFR means that your kidneys are not working properly.

Potassium: Potassium

comes from foods and medicines. High potassium is dangerous for the heart. A high potassium value may mean that your kidneys are not www.kidney.ca/ontario

working properly to remove potassium from the blood.

properly to remove phosphorus from the blood.

Bicarbonate: Bicarbonate neutralizes acid in the blood. This acid comes from foods and daily body metabolism. Kidneys also help remove acid from the blood. A low bicarbonate value may mean that your kidneys are not working properly to remove enough acid and extra bicarbonate is being used up to neutralize this acid.

Hemoglobin: Hemoglobin carries oxygen in the blood. Kidneys make a hormone called erythropoietin (EPO) that “tells” the bones to make hemoglobin. Low hemoglobin values may mean that your kidneys are not working properly to tell the bones to make hemoglobin.

Calcium: Calcium comes from foods

Hematuria (blood in urine) and Proteinuria (protein in urine): Even if

and supplements. It is absorbed into the body with the help of vitamin D. Kidneys (plus sunlight) help make vitamin D. A low calcium value may mean that your kidneys are not working properly to help make vitamin D and absorb calcium.

Phosphorus: Phosphorus comes from foods. A high phosphorus value may mean that your kidneys are not working

all the above lab values are normal, you may have hematuria and/or proteinuria that suggest damage to the filtering mechanism of your kidneys. Remember to always discuss your lab values with your health care team. 

Spring 2012 / Kidney Living /

COMMUNITY HIGHLIGHTS

Community Highlights March Drive Canvassers Hit the Streets t For the past 18 years, Elda Sauder has been engaged in her community of Kitchener, Ontario as a canvasser for the Kidney Foundation’s March Drive door-to-door campaign. Elda is an inspiring, passionate and friendly volunteer who has given whatever she could to the Foundation in her role as a March Drive Captain. In preparation for the campaign you will find Elda on the road, driving kits to drop off and pick up points in her area, tallying money and raising awareness about kidney health. When asked why she does it, Elda said she does it for all her relatives, friends and people in her community who have kidney disease, or have been involved in kidney transplantation. As March Drive kicks off shortly, Elda is ready to get on the road and connect with the familiar faces who also support The Kidney Foundation each year. We thank Elda for all the support, hard work and dedication she has devoted to The Kidney Foundation and the community. Volunteers like Elda make it possible for The Kidney Foundation to continue to fund and stimulate innovative research, provide education and support, promote access to high quality health care, and increase public awareness and commitment to advancing kidney health and organ donation.

Holiday Party supports The Kidney Foundation u Saturday, November 26, 2011 was an evening to remember. Bobby and Vinny Maker, owners of Cellular Point and Value Mobile, organized a stylish Moroccan-themed holiday party. Approxmately 300 people attended the event, including family, friends, staff and representatives from their carriers which include Rogers, Fido, Telus, Koodo, Chatr, Wind and Mobilicity. That evening a tribute was paid to Bobby Maker’s father “Thaker Maker,” who passed away from kidney disease in 2010. The event was filled with excitement and unforgettable entertainment from belly dancers to traditional Bhangra dancers which only added to the event’s success. To top off the memorable evening, an incredible $20,000 was raised for The Kidney Foundation by Bobby with support from all the carriers.

/ Kidney Living / Spring 2012

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

It left a lasting impression u Impressions 2011 paid tribute to the transplant community in Hamilton. Guest speakers, Brenda Barham and Agnes and Leonard Wolters shared their personal experience of living with kidney disease and receiving the gift of life. Special thanks to our event chair Dr. Anil Kapoor, and guest speakers Dr. David Russell, Dr. Azim Gangji, Dr. Darin Treleaven and Dr. Christine Ribic for educating guests about the very vibrant transplant centre we are so fortunate to have in Hamilton.

L to R: Dr. A Gangji, Dr. A Kapoor, Dr. D. Russell, Agnes and Leonard Wolters, Brenda Barham, Dr. D Treleaven and Dr. C Ribic

Riverside Secondary School Supports The Kidney Foundation u On Friday, October 28, 2011 over 750 students from Riverside Secondary School teamed up to fight chronic kidney disease by running 3km and raising $5,500 for The Kidney Foundation. Led by the recreation and fitness class taught by high school teacher, Aaron Martin, the students implemented a unique Halloween theme, “March of the Undead” for the event.

Aaron Martin presents a cheque to Mike Brennan of the Windsor and District Chapter.

Notice The Kidney Foundation of Canada Ontario Branch Annual General Meeting May 5, 2012 For information call 1.800.387.4474 ext.4972 www.kidney.ca/ontario

www.kidney.ca/ontario

 The Kidney Foundation of Canada thanks you for your support. The personal contact information that we have on file for you is used for the purpose of sending you this publication. From time to time we may use your contact information to keep you informed of other activities, events and/or fundraising opportunities in support of the Foundation. Should you, at any time, wish to be removed from any of these lists, kindly check below and mail this back to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1, or contact us via email at grose@kidney.on.ca. Please allow up to 30 business days to update our records. q Please take my name off the contact list for this newsletter. q I do not want my name to appear on The Kidney Foundation of Canada’s other contact lists. Indicate your name and address as it appears on the mailing label or include the mailing label with your request. _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ If you have any questions or need more information about how the Foundation respects your privacy, email us at privacy@kidney.ca, Attention: Chief Privacy Officer.

Spring 2012 / Kidney Living /

COMMUNITY HIGHLIGHTS

For more details about these events and future happenings in your community, call The Kidney Foundation of Canada office nearest to you (see p. 2), or visit www.kidney.ca/ontario.

March

1-31 Kidney Health Month and March Drive Door to Door Campaign 1-31 Chili Promotion, Wendy’s Restaurants, Sault Ste. Marie 3 11th Annual Marvin Valensky Memorial Stick Spiel, Kingston 6 Sidney the Kidney Launch at Sir John Moore School, Corunna 10 Italian Night, Ottawa 13 Kidney Connect Peer Support Meeting, Kitchener 20 Kidney Connect Peer Support Meeting, Brantford 21 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 23 March into Kidney Health, Infomation Session, London 26 Kidney Connect Peer Support Meeting, Mississauga 29 National Launch of the New Challenge Campaign 31 10th Annual Kazman Kidney Dinner Dance, Brampton 31 Kuts for Kidneys, Sault Ste. Marie 31 Transplant Camp Bowlathon, Toronto

April

14 Spin to Win, Ottawa 15-21 National Volunteer Week 18 Kidney Connect Peer Support Meeting, Kitchener and Thunder Bay 18 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 19 Celebrity Men in a Fashion Event Media Launch, Sarnia 22-28 National Organ and Tissue Donation Awareness Week

May

4-6 Ontario Branch Annual General Meeting and Volunteer Reception 15 Kidney Connect Peer Support Meeting, Kitchener and Thunder Bay 16 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 19 BBQ at Ferrera Concrete, London Line and Brigden Sideroad, Sarnia

/ Kidney Living / Spring 2012

22 100 Holes of Golf, London 24 Celebrity Men in a Fashion Event, Sarnia 26-27 Ottawa Marathon, Ottawa 28 Kidney Connect Peer Support Meeting, Mississauga and Brantford 30 12th Annual Windsor Star Pasta and Pizza Fest, Windsor 31 The Don Cousens Tribute Event Rhythm and Blue—Celebrating the Miracle of Transplantation

June 8

13 20 20 20 24

Christine Labrasceur Memorial Golf Classic, Sarnia Kidney Connect Peer Support Meeting, Kitchener Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa Kidney Foundation Golf Tournament, Kingston Kidney Connect Peer Support Meeting, Thunder Bay Ball Hockey Tournament, Hamilton

July

10 Kazman Kidney Classic, Milton 14 HOPE Volleyball Tournament, Ottawa 15-21 Kids Transplant Camp, Muskoka 17 Kidney Connect Peer Support Meeting, Kitchener 18 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 23 HUB International Golf Classic, LaSalle 28 6th Annual Biz X Beach Jam Volleyball Tournament, Tecumseh 30 Kidney Connect Peer Support Meeting, Mississauga

September

Give the Gift of Life Walks in your community 8 Cruisin’ for Kidney, Timmins 18 Kidney Connect Peer Support Meeting, Kitchener 19 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 24 Kidney Connect Peer Support Meeting, Mississauga

October

14 Kidney Car Rally, Sarnia 17 Kidney Connect Peer Support Meeting, Kitchener 17 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 21 Patient Educational Symposium, Kingston 25 Celebrity Men in a Fashion Event, London 26 Kreepy Night for Kidneys, Sault Ste. Marie

November

13 Kidney Connect Peer Support Meeting, Kitchener 14 Celebrity Men, Ottawa 21 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 25 Patient and Family Christmas Dinner, Corunna United Church 26 Kidney Connect Peer Support Meeting, Mississauga 29 Impressions, Hamilton

August

9-11 Sarnia Pro Am, Sarnia Golf & Curling Club 12 Greenfield Golf Tournament, Aurora 15 Kidney Connect Peer Support Meeting, Kitchener 15 Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa 16 Fore Women Only Golf Tournament, Kingston

Visit www.kidney.ca/ontario for the latest event postings. www.kidney.ca/ontario

BUILDING A FOUNDATION

2012 Membership Application and Renewal Form Mail your completed form to your local Kidney Foundation office. See p. 2 for a complete office listing.

Count me in! I want to support the work of The Kidney Foundation of Canada. Please print clearly

Name _______________________________________________________________________________________________ Address ______________________________________________________________________________________________ City ____________________________________________ Prov _____________ Postal Code ____________________________ Phone _______________________________________ Email __________________________________________________ $10 Voting Membership + $___________ Donation = $___________ total. All donations are gratefully accepted. Your contribution will help us provide needed services in your community. Method of Payment: q Cheque q Visa q Mastercard Credit card # _____________/_______________/____________/____________

Expiry_________/__________

Signature ____________________________________________________________________________________________

Please complete the following information as we are very interested in developing a profile of our membership. The information will be held in confidence. q I have kidney disease q I am on dialysis q I have a kidney transplant q I do not have kidney disease q I am related to someone who has kidney disease q I am a healthcare professional q I am interested in the work of the Foundation I am q 17 or under q 18 to 29 q 30 to 44 q 45 to 59 q 60 to 75 q 76+

www.kidney.ca/ontario

“Snowflakes, leaves, humans, plants, raindrops, stars, molecules, microscopic entities all come in communities. The singular cannot in reality exist.” ~ Paula Gunn Allen

Volunteering is community. Find out how you can volunteer or donate.

 www.kidney.ca/ontario www.kidney.ca/ontario

Spring 2012 / Kidney Living /

Share your story. Support a good cause. Become a source of inspiration!

For more information: www.kidney.ca/storiesofhope Submit your story before March 31 for a chance to win one of ďŹ ve awards of $500.

Disponible en franĂ§ais

Canadian Publications Mail Agreement # 40011479

Postmaster: Please return undeliverable Canadian addresses to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1